Adoption: Telling Genetic Secrets

As The Link Between Genes And Disease Grows, Adoption Agencies Are Urged To Collect And Release Genetic Information.

December 30, 1991|By Cindy Schreuder Of The Sentinel Staff

Every time Kaye Best drops a glass, she wonders: Is she starting to lose control, succumbing to a painful, degenerative genetic disease?

Adopted as an infant when the procedure was intensely secretive, Best was a 41-year-old mother of two before she learned she may have inherited a fatal genetic disorder called Huntington's chorea.

Unknowingly, she may have passed the genetic legacy to her children. Best and her children are now healthy. But without blood samples from her birth family, geneticists cannot determine if the Michigan mother or her children have inherited the disease, in which the brain degenerates, resulting in behavioral changes and jerky movements.

Best heard about her family history after her biological aunt encouraged another relative to find her and tell her about Huntington's.

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As scientists learn more about the link between genetics and disease, some adoptees, prospective adoptive parents and adoption agencies want such information about adopted children to be collected and released.

Generally, adoption agencies collect some medical information about the birth parents, particularly the mother, including such things as whether she took drugs during pregnancy. But questions about genetically based conditions such as muscular dystrophy may not be asked, and genetic testing usually is not done.

''Just as questions of medical information became important to adoptees and parents, I think it's going to be even more true for genetic information, because it has long-ranging implications,'' said Lynn Fleisher, a Chicago lawyer who has a doctorate in genetics and specializes in health law.

Gathering information isn't simple

But the collection of genetic information raises many questions, including: How much information should be gathered? Who should have access to it? Will collecting information about adoptable children make some harder to place because they are at risk of developing a serious disease? And how should the privacy of birth parents and children be protected?

Even though genetic screening is more common in pregnancies today, adoption agencies have been slow to use it. Geneticists, on the other hand, have been slow to explain how it can be helpful in adoption cases.

That is changing. Adoption agencies now want information collected and dispensed to avoid legal liability if adoptive parents are unhappy with the child.

Prospective parents want to know as much as possible about health problems that might accompany that little bundle of joy.

Adult adoptees want to know more about themselves so they can better manage their health care and plan their families.

Children who have been adopted may be especially fearful of passing on a genetic disease to their children, said Meghan Taylor, an adoptee studying to be a genetics counselor at the University of South Carolina.

''We don't have a family to look at and say, 'That doesn't run in our family,' '' she said. ''It's fear of the unknown.''

So little to go on

Historically, birth parents have provided little genetic information, and adoption agencies have not requested it, in part because the genetic roots of disease have only recently become clear. Only one state, Wisconsin, requires collection of genetic information.

Adoptions often are fraught with emotion and tension. Parents who give up a child for adoption may know little of their own family's medical history or be unwilling to provide it, social workers say.

Or the information may be too vague to be useful.

''They'll say, 'Uncle Joe acted crazy sometimes,' '' said Paula Clegg, an adoption worker for the Michigan Department of Social Services who has been trained to collect genetic information. ''They're not able to say, 'He was diagnosed with this.' ''

Geneticists wonder how information can be updated, even if it is obtained at the time of the adoption.

''Say a child is adopted as an infant and then in the first two years of life is diagnosed with a syndrome or abnormality,'' said Janice Edwards, director of genetic counseling at the University of South Carolina School of Medicine.

''How do you get back to the parents who released that child to let them know they are gene carriers and that in another pregnancy, should they have one, they may be at risk?''

The makings for a better match

Geneticists say that supplying the information makes for a better match between children and families. It also makes it possible to match children with families who have a special expertise with a disease.

Ed and Pat Lang of Davie are dwarfs who adopted two dwarf children in the 1980s. Both children are now 9 years old.

''We had experienced a lot of the things they would be experiencing,'' said Pat Lang, who is 3 feet, 3 inches tall. ''We felt we could offer them a lot.''